Sunday, June 27, 2010

Still home (yah!)

Tomas is hanging in there. He has been running 99.7-100 every day, but that is still low enough to keep him home. One of his lower incisions blistered and pussed up. This is 2 months after the surgery and the second incision to get a small infection. That all just makes me think that whatever is going on with his blood is not over, but darned if the doctors can find it. He has a few other minor things going on but not enough to make me want to go to the Drs office again. He has a follow up hem/onc appt. on Thursday and a few important test results should be in by then. I have been trying to dig out the laundry room as 10 days of no one doing the wash can get pretty impressive.
I've been spending time with the girls and leaving Tomas at home as much as Mike is able to watch him. Yesterday I did take him to Bath and Body works with us and sure enough a sweet woman came over and oohed and ahhed and then touched his head (ok) and then his hand (not ok). It is so hard, I can't figure out how to stop the movement without doing a quick yell to get the person's attention. Since I am ok with people talking to him or even touching his head it gets really weird to try to interrupt if they start to cross a line they have no idea even exists. I have a sign on his stroller that says "Stop, please wash your hands before touching mine.", but some people are just oblivious. The alternative is to tell them to please not touch at all and then I have to go into an explanation of why. And just for kicks Victoria woke up sniffling, sneezing and coughing this morning. Really, unless we put him in a bubble it is just not a game we can win.
Please pray for my father in law, he is having quadruple bypass surgery on Tuesday. They only found out last week that he even had a blockage so this has come at them VERY fast and my MIL is a wreck.

5 comments:

Yeah for still home.Sending prayers for Tomas and the rest of the crew,as well as your father-in-law.

I so get the hands thing.I am not as crazy about it since treatment is over.Although it is not as if she has a rock'n ANC today but just not as paranoid.i found myself just asking them not to touch her hands and if I couldn't get to them quick enough,I had that hand sanitizer out in a nanosecond!Good thing she is not a hand chewer and good thing she forgets she has a left hand! ... gotta keep my humor about things,don't I?

Glad he is doing okay. Do you think the slight fever is from the infection? I hope that he get's better. Maybe you can put something on the cut. Or the dr.s could suggest something. Maybe doing a natural antibiotic to help fight the infection. You made me laugh about the hand washing. I am a fanatic about it. Everyone knows not to touch him on the hands without sanitizing. Then today we were at the park for a festival and guess who forget's the sanitizer? All the kid's came running up to him and I had no sanitizer. I almost had an anxiety attach. He He. Lot's of love and praying for your father in law. Hugs.

I use to hang a bottle of sanitizer from the stroller canopy so it hung down right in Max's line of view (or others' view of him) with a large (hand made) no touching sign. Still, some people didn't see it. You just have to re-sanitize his hands/face/whatever after people touch. Hope you get some answers soon, and get to keep staying home.

All about Tomas

When I was around 5 months pregnant an ultrasound revealed a birth defect (duodenal atresia - a blockage between the intestines and stomach) in Tomas which also meant he had a high chance of being a Down Syndrome baby. About a month before he was born I had an amnio that showed he did indeed have DS. He was born on January 16, 2009 and had his first surgery when he was 32 hours old. After that, test result after test result rolled in. In the first month my family learned he had three holes in his heart, his liver was not working, and he had Transient Myeloproliferative disorder (a type of leukemia which resolves in the first few months of life). The second month revealed laryngomalacia (a collapsing larynx), primary and secondary aspiration, and severe reflux. He was switched to tube feedings and had his second surgery to correct the reflux that was causing him to suffocate. The TMD resolved when he was 4 months old, his liver started working when he was 5 months old, and the holes in his heart have closed without intervention. After that we found out his left lung is partially collapsed, he has a stomach hernia and a liver hernia and multiple bowel hernias, and was recently diagnosed with neutropenia. He had another 2 surgeries. He is on J-tube feedings, requires oxygen support, needs to be on a pulse oximeter monitor, and has 10 specialists who follow him. He is exactly what I never knew I wanted. He has taken our family and carried all of us to a place where every smile matters, where the days breathe with possibilities, and joy reigns supreme.

"The real choice in accepting or rejecting a child with special needs is never between some imaginary perfection or imperfection. The
real choice is between love and unlove, between courage and cowardice, between trust and fear. And that’s the choice we face as a society in deciding which human lives we will treat as valuable, and which we will not. "